Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.


  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):
  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Seeking Advice On Scope Test Upcoming


Matty

Recommended Posts

Matty Rookie

Hi all,

 

I will try to make this quick, but I could really use some advice from thos here about what I should do leading up to a scope test in a few weeks.

 

So long story short, I saw my family doctor oh about a month ago and told him about my (getting now) severe GI issues. The painful bloating, the frequent loose stools/diarrhea that was having me now run to the bathroom after almost every meal. The dehydration, almost complete health declince etc. You get the point...

 

Anyways he did a blood test for Celiac, referred me to a GI specialist (I live in Canada), and advised me to cut out gluten while I wait for that appt. Well that appt. (because our health system rocks!) was 8 months out. Hesitant to go gluten free, because I want a diagnosis!, I did knowing I couldn't wait 8 months.

 

Well its been a few weeks and the bloating has almost completely subsided, my bowel movements are a lot less frequent and "some" better as well. I still feel like I could die at any point (become that unhealthy) but I do feel like together with the gluten free, sublingual vitamin supplements and better sleeps might be finally starting me on the healing path. Don't feel that much better but enough to notice.

 

So here's my conondrum:

 

Yesterday the GI Specialist Office called and said we have an appt. for June 3rd for a scope.

 

Now dealing with various health issues for years, I feel like I need a diagnosis. To put some closure to this. I'm fairly confident NOW that i have it nailed down (despite negative Celiac tests genetic testing has shown I have HLA DQ1). But I want a doctor to see it for himself and tell me.

 

My concern is continuing to go gluten free will allow me to heal and the scope will be inconclusive, allowing more doubt to creep in.

 

So should I have gluten leading up to the test? What would you do in my situation?

 

Thanks all in advance.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Welcome Matty!

 

It is great that your appt moved up.  It does present a problem as you have already removed gluten.

 

Which Celiac Disease Antibody tests were run? 

 

Were any nutrient blood tests run?

 

Exactly how long have you been gluten-free and has it been strict?

 

Most major Celiac Centers recommend 1/2 - two slices of glutenous bread per day for 6-12 weeks -- 12 is better.  That being said -- if you can tolerate it -- perhaps eat a sandwich for a snack late in the day -- each day until you appt.  If you do this and become substantially sicker -- document it and talk to the GI about it.

 

Hang in there -- sounds like you are on the right path to improve your health :)

Matty Rookie

Welcome Matty!

 

It is great that your appt moved up.  It does present a problem as you have already removed gluten.

 

Which Celiac Disease Antibody tests were run? 

 

Were any nutrient blood tests run?

 

Exactly how long have you been gluten-free and has it been strict?

 

Most major Celiac Centers recommend 1/2 - two slices of glutenous bread per day for 6-12 weeks -- 12 is better.  That being said -- if you can tolerate it -- perhaps eat a sandwich for a snack late in the day -- each day until you appt.  If you do this and become substantially sicker -- document it and talk to the GI about it.

 

Hang in there -- sounds like you are on the right path to improve your health :)

 

Thanks for the reply Lisa I really appreciate it.

 

I'm sorry but I can't recall which tests were run, there were three of them though I believe.

 

Vitamin D tests have been very low and despite taking tabs has continued to be low its a real problem. Also B12 that he told me anyways...

 

I've been gluten free since April 16th to be exact. And I feel I've been very strict, a lot of raw foods, otherwise significant label checking. Haven't slipped once (that I know of anyways).

 

I am confident its removed my bloating (looked 9 months pregnant after any bread before), and my stools are far better (sometimes I even get constipated now!). My health however has only slightly improved if that, despite taking large doses sublingual vitamin D/B12, liposomal vitamin C and liosomal calmag together with cutting out gluten.

Deaminated Marcus Apprentice

Hi Matt,

 

Some might not agree, but I think it's worth to suffer now by eating bread and to get your problem investigated properly by the GI.

 

You could also have another condition with or without Celiac that causes similar symptoms.

 

Will you be having a consultation with the GI doctor first or are you just gettting the endoscopy?

 

Is the GI doctor also doing a colonoscopy?

 

Was the blood test positive?

GottaSki Mentor

Thanks for the reply Lisa I really appreciate it.

 

I'm sorry but I can't recall which tests were run, there were three of them though I believe.

 

Vitamin D tests have been very low and despite taking tabs has continued to be low its a real problem. Also B12 that he told me anyways...

 

I've been gluten free since April 16th to be exact. And I feel I've been very strict, a lot of raw foods, otherwise significant label checking. Haven't slipped once (that I know of anyways).

 

I am confident its removed my bloating (looked 9 months pregnant after any bread before), and my stools are far better (sometimes I even get constipated now!). My health however has only slightly improved if that, despite taking large doses sublingual vitamin D/B12, liposomal vitamin C and liosomal calmag together with cutting out gluten.

 

So only three weeks -- I would eat at least one slice of glutenous bread per day -- maybe a grilled cheese every evening --- if you can have dairy ;)

 

It is important to give all the tests their best chance for accuracy and unfortunately as barbaric as it sounds --- that means ingesting gluten right up until the endoscopic biopsies are taken.

 

Not all GIs are Celiac Disease Specialists so take a complete written list of your symptoms and what improved off gluten along with a list of all blood work needed:

 

Total Serum IgA

tTG - both IgA and IgG

EMA - IgA

DGP - both IgA and IgG

 

B1, B2, B6, B12, D, K, Iron, Ferritin, Copper, Zinc

 

CMP - Complete Metabolic Panel

 

CBC - Complete Blood Count

 

If you want a fast forward -- perhaps ask your primary to run all these so you have the results for your upcoming appointment with GI.

Archived

This topic is now archived and is closed to further replies.

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,353
    • Most Online (within 30 mins)
      7,748

    ace14219
    Newest Member
    ace14219
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SilkieFairy
      It could be a fructan intolerance? How do you do with dates?  https://www.dietvsdisease.org/sorry-your-gluten-sensitivity-is-actually-a-fructan-intolerance/
    • Lkg5
      Thank’s for addressing the issue of mushrooms.  I was under the impression that only wild mushrooms were gluten-free.  Have been avoiding cultivated mushrooms for years. Also, the issue of smoked food was informative.  In France last year, where there is hardly any prepared take-out food that is gluten-free, I tried smoked chicken.  Major mistake!
    • catnapt
      my IGG is 815 IGA 203  but tTG-Iga is   <0.4!!!!!!!!!!!!!   oh my god- 13 days of agony and the test is negative?  I don't even know what to do next. There zero doubt in my mind that I have an issue with wheat and probably more so with gluten as symptoms are dramatically worse the more gluten a product has   I am going to write up the history of my issues for the past few years and start a food/symptom diary to bring with me to the GI doctor in March.   I googled like crazy to try to find out what other things might cause these symptoms and the only thing that truly fits besides celiac is NCGS   but I guess there are some other things I maybe should be tested for ...? like SIBO?   I will continue to eliminate any foods that cause me distress (as I have been doing for the past couple of years) and try to keep a record. Can anyone recommend an app or some form or something that would simplify this? I have a very full and busy life and taking the time to write out each symptom name in full would be tedious and time consuming- some sort of page with columns to check off would be ideal. I am not at all tech savvy so that's not something I can make myself ... I'm hoping there's some thing out there that I can just download and print out   do I give up on testing for celiac with such a low number? I am 70 yrs old I have been almost completely off gluten for the most part for about 2 yrs. I had a meal of vital wheat gluten vegan roast,  rolls and stuffing made from home baked bread and an apple pie- and had the worst pain and gas and bloating and odd rumblings in my gut etc - almost went to the ER it was so bad. I was thinking, since I'm spilling a lot of calcium in my urine, that perhaps this was a kidney stone (never had one before but there's always that first time, right?)    Saw my endo on Jan 20th and after hearing the story about the symptoms from eating that holiday meal, she suggested doing a gluten challenge. She said 2 weeks was fine- she said stopping it in the middle if symptoms got bad was fine- In the meantime I'd read that 2 weeks was not enough- called and argued with the nurse about this, but ultimately decided to stop the gluten on the 13th day and get the test done because I was in too much pain and almost suicidal and knew I could not continue.   so.............. that's where I am now I have had no bread since Sunday. I did have some rolled oats today and had some gas and bloating afterwards I did have some wheat germ in a smoothie on Tuesday and had a stomach ache later that night.   but overall I feel so much better! all the joint pain is gone! the nausea is gone. The stomach pain and gas and bloating are going away. Still a bit gassy but no more of that horrible odor. wow, that would clear a room if I was out in public!  I see a GI nurse March 4th  I hope she'll be able to help sort this out! can you think of what my next steps might be?
    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.